Voice Aerobics DVD Helps Strengthen Voice in Parkinson's, PSP, and Related Disorders

Voice Aerobics Blog has a new location

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 16 Jun 2021 12:40:00 +0000

This Blog has a new location, but the author, Mary Spremulli,CCC-SLP, is as busy as ever providing information and education for people with Parkinson's and related disease diagnosis.

The Voice Aerobics family of products were designed to help patients strengthen and improve voice use.

Visit our website and learn more. Better yet, sign up for our newsletter and become one of the family! https://voiceaerobicsdvd.com/

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice

Voice Aerobics the heART and Science of Voice Practice

Parkinson's Pesticides and the EPA: Do you care?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 14 Jul 2018 20:35:00 +0000

The recent resignation of EPA administrator, Scott Pruitt, amidst numerous ethics controversies, was a relief to some environmentalist, but, his predecessor Andrew Wheeler’s vocal skepticism about climate change suggests that the agency may still be impotent to carry out its mission under administrative leadership that voices a disdain and disbelief of scientific research.

The Environmental Protection Agency (EPA) was created to serve as a critical public health agency whose primary mission is to protect human health and the environment, and Americans have come to rely on the EPA to develop public standards, based in science, providing protection we all desire for ourselves and our planet.

If you have a diagnosis of Parkinson’s disease, no doubt, you have read or heard of some of the scientific studies which discuss the role of environmental exposure to toxins and the development of PD.

Parkinson’s disease (PD) affects millions of people around the world and is a multi-organ neurodegenerative process with an etiology that appears to be a complex interplay of genetic and environmental factors. It is theorized that there is a “dual-hit” caused by genetic predisposition and subsequent environmental factors interacting to create the cellular dysfunction that causes PD. Several large American cohort studies found self-reported pesticide exposure to be significantly associated with PD.

The Braak model hypothesizes that pathologic agents penetrate the nervous system via the olfactory bulb, gut, or both and gradually spread to the nervous system causing the non-motor and motor features of PD, and although the pathological agent/s have yet to be identified, several environmental exposures have been associated with PD including pesticides.

Although numerous pesticides, herbicides, and other chemicals are implicated as playing a role in the development of PD, scientist seem to concur that more large, multicenter studies are needed, the type that are often funded by the NIH or other government funding sources.

Over my 30 year career, I have sat with many Parkinson’s patients who have wondered out loud about how or why they developed the disease. “Was it the farm I grew up on? The chemicals in the Navy? The chemicals in the factory where I worked?” They ask these questions not only to unravel their own mystery, but because they know that answering the “why” and “how” of this disease underlies the search for a cure.

Identifying and reducing exposure to those factors, including environmental that may mitigate Parkinson’s disease should be important to everyone with PD and to all the rest of us who value our health, our family’s health, and our environment.

Parkinson's community members are encouraged to join the Unified Parkinson Advocacy Council (UPAC)'s efforts against paraquat, an herbicide linke to the developmen tof PD. You can follow the link below to sign an online petition.

Sign an online petition asking the EPA to deny paraquat's reregistration.

The Harsh Reality of Parkinson's disease pays a visit

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 11 Jun 2018 17:12:00 +0000

Several members of our local Parkinson’s community died recently, and while I don’t know the specifics of their death, I suspect that some symptom progression related to Parkinson’s, perhaps swallowing, coupled with some other illness, led to their demise.

“Parkinson’s won’t kill you,” it’s been said, and I have probably said it myself when trying to re-assure a patient that the diagnosis of PD is “not that bad.” But this month, the reality of Parkinson’s is hitting me hard.

A very dear friend with Parkinson’s, who I met 10 years ago, when just starting my business, is declining. Back in 2008, I sent her a Voice Aerobics® DVD to review, and what began as a simple email correspondence evolved into a deep friendship. She became my friend, my confident, the sister I never had, and my muse. She was my go–to-person on living with Parkinson’s disease.

And, I might add, she was a model patient. She ate and lived healthy, dancing and doing yoga, and defying the grim prediction of her first neurologist, who told her that she would be dead in 10 years. Instead, 10 years into her disease, she underwent deep brain stimulation (DBS) surgery and became a champion and spokesperson for the benefits of (DBS).

Since her own mother had died with a diagnosis of Parkinson’s and Lewy body dementia, my friend feared that she, too, might develop dementia, but it was a possibility that we rarely discussed. That is, until last year at some point, when she confided in me that she had begun hallucinating. At first it was thought that medications might be the cause, but, after meds were adjusted, and the hallucinations persisted, it was evident, that her major fear had come true, and dementia was now an unwelcome intruder into her life.

I have stopped receiving daily emails, and I am overcome with sadness at the loss of contact with my friend, and I’m angry. I’m angry, that despite being the “perfect patient,” Parkinson’s has now gained an irreversible foothold in her life.

I have long referred to Parkinson’s as a sneaky disease, much of it lurking in the background of people’s lives, waiting for a moment to advance its cause and hack a life.

And, now, while digesting the harsh reality that has set in for my friend, her family, and our friendship, I carry-on. I must continue to be a therapist, an educator, a coach and cheerleader for the people who enlist me with their care, and while acknowledging that there is no cure for Parkinson’s, I will continue to profess that speech therapy, exercise, and friendships can ease the symptoms, and keep fears about the future at bay.

Voice Aerobics has updated its privacy policies effective 5/25/2018. Please visit our website to review these policies or to contact us: https://voiceaerobicsdvd.com/privacy-policy/

Swallowing and Parkinson's disease: The Patient's Perspective

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 18 Mar 2018 13:58:00 +0000

The Parkinson Alliance, an affiliate of DBS4PD.org, released its 26th survey this fall, entitled:

“Swallowing and Parkinson’s disease: The Patient’s Perspective.”

An introduction and summary of salient survey findings are discussed in the post, but readers are encouraged to view the entire study by following the link below.

People with Parkinson’s disease (PWP) experience numerous symptoms beyond the cardinal signs of Parkinson’s disease (PD): slowness of movement, balance problems, tremor, and rigidity. One such symptom is swallowing difficulty, which is also known as dysphagia. Swallowing dysfunction has been reported to lead to isolation, emotional disturbance, additional medical problems, and even mortality.

The incidence of swallowing dysfunction in PD ranges from 30 to 52%, though some research has indicated that up to 90 to 100% of individuals with advanced disease stages of PD develop swallowing dysfunction, and frequency data for swallowing dysfunction vary widely according to underlying classification, measuring method, and disease stage. Swallowing difficulty can lead to aspiration (entry of foreign objects into one’s airways), which can result in choking or pneumonia, the latter being a leading cause of death for individuals with Parkinson’s disease .

Self-reported swallowing difficulties were highly prevalent for the participants in this study: 67% of the participants reported that they experience swallowing difficulties, with 24% reporting moderate to severe swallowing difficulties and 43% of participants reporting mild difficulties with swallowing. Despite the high report of swallowing difficulties, only 34% of the participants have had a swallowing evaluation.

Disease duration more so than age appears to be a better predictor for increased swallowing difficulties, and The Advanced Disease Duration group (11+ years) for both younger and older participants reported symptoms in greater frequency as compared to the Early Disease Duration and Advanced 6-10 Years Disease Duration groups, suggesting that disease duration increases the risk for swallowing difficulties for individuals with PD.

The majority of the participants in this survey were unaware of common swallowing assessment procedures, and even fewer reported having had a swallowing assessment or discussed treatment, despite the high rate of individuals reporting swallowing difficulties.

A current model proposed by Braak et al lends support to the presence of speech and swallowing abnormalities as early motor signs of PD, and even at preclinical or prodromal stages of the disease. The lack of reported symptoms by patients early on, may represent some ability to compensate for these subtle changes. Drooling is a common symptom reported by many patients referred to me for an evaluation, and yet, patients are often surprised when I suggest that it is an indication of a changing swallowing mechanism.

The authors of the Parkinson Alliance report sum up their findings aptly:

It is important for people with Parkinson’s disease to be proactive about noticing signs and symptoms of swallowing difficulties and to request an evaluation/treatment by a Speech Language Pathologist knowledgeable about Parkinson’s and who specializes in swallowing.

I would add that a clinical swallowing assessment and baseline instrumental exam should be a part of patient’s initial comprehensive evaluation with a speech-language pathologist. Obtaining baseline data can help to identify patients at risk, provide goals for initiating treatment early, and also support the recommendation for swallowing exercise/s, which show promise for helping to improve and preserve swallowing function.

To read the full report please go to: http://www.dbs4pd.org/media/file/DBS-SwallowingReport-withReferences-web-2017.pdf

If you would like hard copies of this report call 1-800-579-8440.

A patient benefits from video assisted swallowing therapy at his home

Braak H, Del Tredici K, Rub U, de Vos R, Jansen Steur E, BraakE. Staging of brain pathology related to sporadic Parkinson’sdisease. Neurobiol Aging. 2003;24(2):197–211.

Should Swallowing Exercises be Introduced Early in Parkinson's disease

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 04 Mar 2018 14:39:00 +0000

When attending seminars for persons with Parkinson's disease I am always a bit annoyed when I hear speakers refer to swallowing (dysphagia) and speech symptoms (hypokinetic dysarthria ) as "non-motor" symptoms of Parkinson's disease (PD). After all, approximately 100 muscles are involved in speech production and 50 paired muscles involved in swallowing, hence when patients present with problems, they are manifesting motor speech or swallowing symptoms.

Current models that attempt to explain the pathway for Parkinson's such as the one proposed by Braak et al give evidence for the presence of speech and swallowing abnormalities as early motor
signs of the disease, or what are referred to as preclinical or prodromal stages of the disease .

Involvement of the dorsal motor nucleus of the glossopharyngeal (cranial nerve IX) and vagal (cranial nerve X)nerves in the early stages of PD, suggest that voice and speech abnormalities (perhaps due, respectively, to vagal control of voice and glossophayngeal control of vowel – tongue movements) might be among the first manifestations of the disease, perhaps developing at stages 1-2 in Braak et al's model.

It has also been suggested by some researchers that the voice and speech abnormalities during the initial phases of the disease are too subtle to be detected, perhaps due to compensatory adjustments, and later in the disease these motor speech symptoms are often not as responsive to dopamine replacement as the limbs.

So, how early should swallowing exercises begin?

More than 80 % of patients with Parkinson’s disease (PD) develop dysphagia during the course of their disease, and yet, patients often under report symptoms. Although for many patients, swallowing symptoms will be present later in the progression of the disease, as already discussed, the propensity for swallowing problems may be present early, and may include such symptoms as drooling.

Swallowing impairment reduces quality of life, complicates medication intake and leads to malnutrition and aspiration pneumonia, which is a major cause of death in PD, so early intervention by way of exercise could be of benefit, yet, few high quality studies currently exist to guide therapists and neurologist as to what might yield the most benefit.

Several high quality studies examining the effect and benefit from expiratory muscle strength training (EMST) have been published and results are promising, showing a reduction in penetration/aspiration post 4 weeks of EMST use. This type of exercise using a handheld device is relatively easy for patients to complete, not too labor intensive, and if incorporated early into a home exercise regimen may help to delay symptoms, although this will remain to be seen and hopefully future dysphagia research will help us better understand the benefits of early swallowing exercises as a treatment and preventative strategy.

Student - Teacher Anxiety Might Benefit From Breathing Training

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Tue, 27 Feb 2018 13:40:00 +0000

Although an adult takes nearly 23,000 breaths a day, most of them are unconscious, and like heart rate and blood pressure, functions also controlled by the autonomic nervous system (fight and flight system), breathing occurs seamlessly all day and night without us giving it much attention. But anxiety can change breathing patterns making some people feel as if they are suffocating.

Anxiety, and anxiety disorders among the general population are the most common mental illness in the U.S., affecting 40 million adults in the United States age 18 and older, or 18% of the population. (Source: National Institute of Mental Health).

With recent school shootings being prominent in the news, teachers, parents, and students alike may be reporting higher episodes of anxiety. Symptoms such as a racing, anxious mind can speed up breathing and turn an attempt at self-control into hyperventilation. When breathing exceeds the body’s needs (hyperventilation), the body’s carbon dioxide (CO2) is depleted and the resulting physical symptoms can include: dizziness, dry mouth, pins and needles chest pain, and so on. Many anxiety sufferers are often unaware that their breathing pattern is creating or worsening their symptoms.

Studies have shown that the respiratory response can be conditioned quite easily and unconsciously in response to a real or imagined threat, and although conditioning is a primitive system designed to protect us, long after an actual event, memories and images can serve as a stimuli triggering a certain response, leading to anxiety and hyperventilation.

Breathing Training May Help

In contrast to most autonomic nervous system functions, breathing can be partially controlled, and some guided breathing instruction has been shown to help regulate breathing patterns and in turn reduce anxiety symptoms. Breathing training has become a frequent part of several cognitive-behavioral treatment programs as well as meditative and mindfulness approaches, with evidence that learning a few diaphragmatic breathing exercises may be a convenient non- pharmaceutical solution for stress and anxiety relief.

Focused breathing techniques can slow heart rate, and because calm breathing is a physiological strategy, this approach is also virtually universally effective for getting anxiety relief.

Various videos are available on the internet and elsewhere providing guided breathing exercises and meditation. Handheld devices, such as The Breather®, a respiratory muscle trainer designed to strengthen and improve inspiratory-expiratory muscle use might be a tangible way for a child to experience some control over anxiety that manifests as dysregulated breathing.

Listen to my interview: Anxiety and Pain Influences on Breathing with Psychologist and author, Dr. Richard Gilbert.

http://www.blogtalkradio.com/voice-aerobics/2015/06/26/anxiety-and-pain-and-influences-on-breathing

Diaphragmatic breathing and respiratory muscle trainers may help with regulation and strengthening of breathing.

For information and resources related to Anxiety Disorders, you can visit the National Institute of Mental Health: http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml

To order The Breather® visit: https://voiceaerobicsdvd.com/

Ref: Respiratory Dysregulation in Anxiety, Functional Cardiac, and Pain Disorders Assessment, Phenomenology, and Treatment FRANK H. WILHELM Stanford University RICHARD GEVIRTZ California School of Professional Psychology—San Diego WALTON T. ROTH Department of Veterans Affairs Health Care System. BEHAVIOR MODIFICATION, Vol. 25 No. 4, September 2001 513-545

Treating Parkinson's From a Strengths Perspective

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 24 Feb 2018 13:40:00 +0000

There is growing evidence supporting the use of strengths-based practices when serving patients and their families.

Yesterday I was invited to speak to a local Parkinson's support group, and I invited 3 members of The LOUD Crowd® a weekly speech class I host, to join me.

During the 90 minute presentation, I discussed some of the therapy options and device interventions that are currently available to improve the speech, voice, and swallowing symptoms associated with Parkinson's disease.

Much of the 90 minute presentation was designed to be interactive, and the LOUD Crowd members helped by leading the group in some vocal function exercises. Afterward, they were invited to share their personal experience with attending a weekly speech group.

My heart was warmed to hear their endorsements. There is no fee for attendance at the weekly class, and 15 months ago when I began to offer the after therapy program, my only request was that participants make a commitment. A commitment, not to me, but to themselves, and to one another, to show up weekly, be engaged, support each other, provide feedback to each other, and most important, HAVE FUN!

Members of this weekly speech class are at all different stages of Parkinson's disease, and some have had a diagnosis for as little as a year, and others over 25 years, but we all learn from one another. Members learn from one another how to maximize their strengths, because after all, that's all that any of us has to work with.

When I have sat at Parkinson's lectures and listened to a speaker make their way through the list of motor and non-motor symptoms of the disease, it sounds like a depressing litany of problems to be managed. And even when a patient is first referred for speech and/or swallowing therapy, the initial focus may be on the problems.

But if we are to truly engage patients and their support team, whether a spouse or adult children, we must also focus on strengths. A few ways we can do this include:

Active partnering between patients and team members
Empowerment
Individualized, goal-oriented, and community focused services

As therapists and other health care providers, we can watch our language. We can use deficits based or strength-based language.

Strengths-based providers use language that identifies strengths and positive attributes, promote involvement from all team members, and focus on goals and solutions.

As a result of the use of strengths-based approaches in clinical settings, patients and their families will become more empowered and will be more able to partner with providers. In addition, treatment plans will be more community-oriented and solution-focused.

Over the year now that I have held a community-based speech class, it has been heartening for me to shift from the "expert" role to collaborator with my patients who model desired behavior, coach and support one another.

Voice Aerobics® serves as a warm-up exercise

Cognitive-linguistic exercises address the challenge of conversational speech

Saleebey, D. (2009). The strengths perspective in social work practice (5th ed.). Boston, MA: Allyn and Bacon

A Pilot Study on Professional Documentation: Do We Write From a Strengths Perspective?

Matthew J. Braun,a Winnie Dunn,b and Scott D. Tomchekb,c American Journal 972 of Speech-Language Pathology • Vol. 26 • 972–981 • August 2017

Healthcare providers need to stay vigilant about domestic violence and "nice" guys sometimes do bad things

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 14 Feb 2018 14:23:00 +0000

Since 1995, in Florida, I have had to complete a Domestic Violence course every two years, upon renewal of my professional nursing and speech-language pathology license. This requirement came about as the result of a task force implemented to investigate the problems associated with domestic violence in 1993, by then Governor Lawton Chiles

Domestic violence, also referred to as spousal abuse, battering, or intimate partner violence refers to the victimization of an individual with whom the abuser has or has had an intimate or romantic relationship. It is regarded as one of the most serious public health problems in the Unites States, with reports of 1,200 deaths in the US in 2014, and 205 deaths reported in Florida.

Because of the high prevalence of domestic violence in the United States, and because the injuries often are severe enough to lead someone to the emergency room, nurses and physicians are often the first to interact with victims, and hence, the bi-annual education remains essential.Research has found that 49.6% of women seen in emergency departments reported a history of abuse and 44% of women who were ultimately killed by their abuser had sought an emergency department in the two years prior to their death.

Women, of course, aren't the only potential victims of domestic violence and abuse, with elderly, children, and even men also at risk,and given the prevalence, it shouldn't only be nurses and physicians who are expected to recognize a potentially dangerous situation.

A victim could be a sister, a friend, or a co-worker, who needs to know that it is necessary and safe for them to report what is going on. The victims need to know that the police and others will believe them, and that reporting an incident won't result in the threat of more violence from their abuser, particularly if a husband or boyfriend.

There is an interesting, albeit, at times distressing, wave of activity going on in our culture at the moment. And the recent announcement of presidential aide, Rob Porter's resignation over domestic violence allegations, and Donald Trump's dismissal of the victim's accounts, only re-enforces the importance of Domestic Violence education, and the vigilance that we all must maintain about recognizing when even "nice" people are doing bad things.

URGENT! Tell Congress Make Access to Speech Generating Devices Permanent

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Tue, 06 Feb 2018 20:53:00 +0000

Give Patients (People) with Communication Impairments the Right to Access Speech Generating Devices at Home and in the Hospital, for as long as needed.

As soon as today, Congress will be voting on the Steve Gleason Enduring Voices Act, which builds upon the successes of the Steve Gleason Act of 2015. The Steve Gleason Enduring Voices Act permanently fixes the Centers for Medicare and Medicaid Services (CMS) policy that previously limited access to speech generation devices for people with degenerative diseases.

Help us pass the Steve Gleason Enduring Voices Act!

The Act makes permanent the valuable changes made by the Steve Gleason Act of 2015.
It allows Medicare payment for communication devices.
It maintains the payment category for these personalized devices and lets people keep them for as long as they need them, regardless of care setting.
It also provides coverage for the accessories needed to allow the devices to work effectively.

-
See for yourself the difference these devices make, and then Contact your Legislators today to urge them to pass this important legislation.

Thank you for supporting the right to communicate.

Sincerely,

Steve Gleason

Gleason Initiative Foundation
930 Robert E Lee Blvd
New Orleans, LA 70124

Parkinson's Voice Inside-Out: 2 Bloggers Share Insights and a Prayer to St. Blaise

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 03 Feb 2018 11:04:00 +0000

Today, February 3, is Saint Blaise's feast day, which in Catholic tradition, includes the Blessing of the Throats. Saint Blaise’s protection of those with throat troubles comes from a legend that a boy was brought to him who had a fishbone stuck in his throat. The boy was about to die when Saint Blaise healed him. Saint Blaise is also the patron saint of wild animals because of his care for them and of those with throat maladies. Since voice and swallowing problems are common symptoms of Parkinson’s, we thought we’d take today to share our insights.

About today’s posts:

Kate Kelsall, blogger, Shake, Rattle, and Roll and Mary Spremulli, blogger, voiceaerobicsdvd.blogspot, began a correspondence in 2008 that evolved into a deep friendship. Kate has been living with Parkinson's for 20 years, and in her blog posts shares her trials and triumphs, along with current information that can help others manage their disease and manage their lives. Mary has been a medical speech-language pathologist for 30 years, and her blog posts include information about available speech and swallowing treatments for persons with Parkinson’s and other neurological diseases. She also frequently discusses the concerns of patients and their families that arise in her day to day private practice.

A message from Kate and Mary:

A few years ago, in our shared posts we responded to each other’s questions, and invited you to follow our blogs. We hope the information we provide offers support to others living with Parkinson’s and some guidance for improving or maintaining Your Great Voice and spirit!

Kate and Mary

Below are Kate's responses to my questions. To View Kate's questions for me and my responses, please visit her website by following the link at the end of today's post.

Mary asks Kate: (Kate’s responses are in blue)

1. You have lived with Parkinson’s Disease (PD) for 20 years, now, in fact, exceeding the prediction of your first neurologist. What do you wish therapists and other health care providers understood about YOU, the person living with PD?

After living with Parkinson’s for 18 years, I had exceeded my first neurologist’s prediction that I would live for ten years after my diagnosis. Every day during my 10^th year of PD, I worried if today was the day that I would die. Thankfully, the neurologist was wrong in her prediction.

I would like therapists and other health care providers to understand that I am strong-minded, resilient, and am determined to make the best of my life despite PD. I am involved in meaningful and purposeful activities such as writing my blog, Shake, Roll and Roll. During the past eight years, I have co-founded and co-lead the Bionic Brigade DBS Support Group. The secret of my longevity with Parkinson’s is keeping my body and mind active.

2. You underwent Deep Brain Surgery (DBS) surgery nine years ago, and have really become quite the champion of that procedure because you have had such a good outcome. What are the main things you tell someone who is considering undergoing DBS?

The main things that I tell someone who is considering DBS are the following: DBS helps to relieve the motor symptoms of PD. It reduces stiffness and improves the ability to move. DBS may also reduce the severity of tremor.

DBS is not a cure for PD. There is currently no cure for PD, and PD continues to be a progressive and chronic disease.

It frequently can take up to six months or more for optimum DBS programming and adjustment of your medication.

Don’t expect that DBS can relieve ALL of your motor symptoms such as tremor, dyskinesia, dystonia and rigidity ALL of the time. But do expect DBS to manage SOME of your motor symptoms SOME of the time.

Don’t expect that DBS to be a treatment for your non-motor symptoms of PD such as speech and swallowing problems. These problems, in addition to gait difficulties, sometimes worsen as a result of DBS.

I’m not saying that you have to lower your expectations, but it’s important that you at least clarify these expectations and those of your spouse, family, and DBS team. You need to discover the similarities and differences of your expectations and have some consensus among these expectations.

3. Why did you decide to enroll in speech therapy? Did you notice your speech or voice was changing, or was it simply the recommendation of your neurologist at the time?

Before being diagnosed with PD, I was involved with Toastmasters and gave presentations to the group and also within the community. The feedback that I received was that my voice was quiet, that my voice and face lacked expression, and that my left hand shook.

In order to get treatment for my soft voice, I obtained a referral from an ENT who referred me for vocal cord augmentation surgery. I had unsuccessful vocal cord surgery in February 1996, and I was diagnosed with PD shortly thereafter in May 1996.

None of my neurologists have ever recommended speech therapy for me. It was only through my own initiative that led to getting a referral for LSVT®.

4. One of my pet peeves is when at PD conferences; the organizers refer to persons with PD as “the patients.” How has the diagnosis of PD changed your self-perception?

These are the labels that I find upsetting when referring to a person with PD:

Patient (when I’m not his/her patient)

Victim

Sufferer (and other derivatives of suffer)

Parkie

Afflicted by

Handicapped by

It is important to let others know which words are preferable to you as a person living with PD. At first after being diagnosed with PD, I developed a self perception of being an imposter, denying and not accepting that I had PD. I thought I could PD beat with a positive mental attitude. Later in the PD journey, I developed a-perception that my identity is far greater than that of a PD patient. I am a person living with PD who is also a wife, blogger, writer, counselor, volunteer, dog-lover, daughter, sister, aunt, cousin, niece, friend, dancer, musician and much more.

5. When someone’s voice is changing, becoming softer, because of PD, their spouse often begins to do a lot of the talking. How have you and Tom, your husband, struck a balance between you speaking for yourself, and him offering help at those times when you may be having more difficulty with your voice.

Tom and I have developed strategies to deal with the changes in my voice, and we’ve been able to strike a balance between speaking for myself and other times accepting Tom offers for help when I’m having more difficulty with my voice.

The following are some of the strategies that Tom and I have used:

When I hear or understand only part of what Tom is saying, I don’t say “what?” or “huh” but instead say the part of the message that I heard in the form of a question. This allows Tom to clarify his or her message and creates a respectful communication exchange.

I have often felt left out or isolated in group situations because my voice is quiet, and I sometimes can have difficulty hearing or understanding what others are saying. I might have trouble formulating my thoughts and keeping up with the pace of the discussion and adding my comments on a timely basis, I occasionally have problems with finding the right word and sometimes have difficulty interpreting and responding to the non-verbal aspects of the discussion.

When I attempt to communicate within a group environment, it is important to develop verbal and non-verbal signals that indicate when I want others to help and when I want to communicate on your own. For example, signals might include the following:

A nod to your partner might indicate “yes, I want your help and please speak on my behalf.”
An index finger up or a palm facing out might indicate “please give me a minute to collect my thoughts.”
I might verbalize “let me try saying that again” because I want an opportunity to restate my communication so that it’s clear.

6. Speaking of marriage, how have you and Tom, your husband, kept Parkinson’s from becoming the most important thing in your relationship?

At times, Parkinson’s is the most important thing in our relationship. The priorities competing for the “most important thing” in our relationship are constantly shifting. Sometimes it’s my health, other times, it’s Tom’s health; sometimes it’s financial issues; other times it’s how to spend our leisure time. Throughout our 40 years of marriage, we have been active, but now our pace of life is a little slower. Sometimes, it’s difficult to tell if the normal aging process has slowed us down or if it’s the progression of PD that caused this. We can’t blame every little ache and pain on PD.

We both have individual interests. Tom loves fly-fishing and bike riding, and I like Broadway dancing and walking and reading. We also have joint interests: travel, attending movies, sharing meals together; and dog-walking our English Springer Spaniel, Rusty.

7. What do you mean about saying a prayer to St. Blaise? Is there some spiritual component to integrating a chronic disease diagnosis into your persona? What gives you hope and trust about what the future will bring?

At first I was angry at God for getting diagnosed with PD. Then I wondered, if not me, who would be a better choice? I need to have a spiritual connection to know that I’m not alone and to maintain my hope and trust about the future with PD.

To View Kate's questions for me and my responses, please visit her website:
http://katekelsall.typepad.com/my_weblog/2015/02/dear-st-blaise-parkinsons-voice-inside-out-2-bloggers-share-insights-1.html

Medicare Therapy Cap Not Good for American's Health Take Action Now!

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 02 Feb 2018 13:14:00 +0000

Because of inaction by Congress, the hard cap on outpatient therapy services under Medicare has been implemented. The cap, which began on January 1, 2018, once again has created uncertainty for providers, patients, and their families.

Therapy cap for calendar year 2018

The allowed dollar amount for 2018 for outpatient physical therapy and speech-language pathology combined is $2,010. For occupational therapy, the cap is set at $2,010.

Part B outpatient therapy settings and providers affected by the cap.

Speech-language pathology and Physical therapy private practices
Offices of physicians and certain non-physician practitioners
Part B skilled nursing facilities
Home health agencies (visits provided on an outpatient basis)
Rehabilitation agencies (also known as outpatient rehabilitation facilities)
Comprehensive outpatient rehabilitation facilities
Critical access hospitals (CAHs)

(Hospital outpatient departments or clinics were not originally included under the therapy cap when it was first enacted as part of the Balanced Budget Act in 1997 and at the moment remain exempt.)

The American Speech-Language-Hearing Association, American Occupational Therapy Association, American Physical Therapy Association and other allies in the Therapy Cap Coalition will continue to keep pressure on Congress to take quick action on the therapy cap in January.

Why Should You Care?

If you or someone you love is a patient with Parkinson's disease or other neurodegenerative disease diagnosis, or you or someone you love is someone recovering from a stroke or catastrophic injury, you are well aware of the importance of speech and physical therapy.

Should you be forced to choose between your ability to communicate or your ability to walk safely?
Should you be forced to choose between reducing your aspiration risk or reducing your fall risk?
Should you be forced to terminate treatment early, because you cannot afford the out of pocket expense?

If you answered "no" to these question, and you or someone you love has benefited from comprehensive therapy that included speech and physical therapy, please,

Take Action!

It is imperative that rehabilitation professionals and patients contact their members of Congress today and request that Congress pass a bipartisan and bicameral policy agreement to repeal the therapy caps once and for all! Just click on the link above and let Congress know you care about your health, and they should too!

Parkinson's and Speech Therapy: Do you have the discipline to practice on your own?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 28 Jan 2018 16:35:00 +0000

This weekend I purchased a Total Gym for use at home. For years I have belonged to a fitness club and worked out rather religiously, but, over the last few years of owning a busy private practice, I have found it harder to find the time and energy to make it to the gym. I am hoping that having a piece of equipment that provides a comprehensive work-out without leaving the house will help me get back into a routine. Of course, the equipment is only part of the solution, I need to create a habit and set some goals I'd like to achieve.

I am pretty sure that every person with a diagnosis of Parkinson's disease has been told or has read that exercise is one of the most important things you can do to delay motor symptoms associated with PD. Even after a course of speech therapy, which is after-all, a form of exercise, patients are advised to continue to practice on their own. But, when speaking to patients at support groups and conferences, I often hear a patient say that they stopped doing their speech and voice exercises. The reasons are similar: too busy, too tired, too many doctor appointments or other commitments.

When you look at the literature about exercise in the general population, some estimates say that nearly 2/3 of adults in the US set fitness goals as a part of their New Years resolution, and yet 73% give up before meeting their goals.

Time and difficulty following a program are among the top reasons people give up, and motivation, planning and social support are keys to success.

So, back to speech practice. What can you do following 30 days of speech therapy to ensure that you maintain the improvements you made? Below are some suggestions based on what I have observed with patients:

If available, join a weekly speech class like The LOUD Crowd®. Recently, 2/3 patients who returned for an annual re-evaluation maintained or improved voice measures from one year ago at discharge. 1/3 had a decline in voice measures.The difference? The patients with improvements in speech have faithfully attended a weekly speech class, which has helped re-inforce the principles learned during treatment.
Utilize a home-based guided program. Just as my Total gym comes packaged with instructional DVD, you may benefit from using a DVD or app that can help you practice without having to remember specific instructions. Examples: Voice Aerobics® DVD and family of products; LSVT® Homework Helper, Speak Up for Parkinson app, a free app developed by the Northwest Parkinson Association.
Enlist the help of a friend. If you attend a local Parkinson's support group, ask around if there is someone who would like to get together once a week and complete some speech and voice practice.
Incorporate speech practice in to your everyday activity. Examples I give patients: before getting out of bed in the morning, sit on the edge of the bed and following some upper body stretches, complete a set of 10 vocal glides. When walking from one room of the house to another, focus on big steps and count out loud. When getting up or pushing up from a chair, vocalize an "ah" and hold it for 10 seconds. Even better, push up from 10 seated surfaces in your house while vocalizing "ah."
Read aloud for 5 minutes a day. Add 5 minutes every week until you are reading out loud 30 minutes a day.
When you are a passenger in the car read road signs. Read license plates out loud and then close your eyes and say it backward.

Take every opportunity you can to improve and maintain your communication abilities. But, most of all, remember, you don't have to go it alone.

Members of Hope Parkinson's program Cape Coral, Florida join me in Voice Aerobics®

Treating Parkinson's From A Strengths Perspective. Are people with Parkinson's sick?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Thu, 25 Jan 2018 13:30:00 +0000

Not long ago, in the Parkinson Life newsletter, an article was featured by Alexander Reed titled: “People with Parkinson’s are not sick.” Reed is the founder of the European Parkinson Therapy Centre located in Darfo Boario Terme, Italy

The author raised several interesting points about medical management and perspectives on living with Parkinson’s disease (PD) and his opinions elicited quite a few diverse comments from readers that were shared on the Parkinson Life website. The varied opinions posted by readers provided an example of how individuals with Parkinson’s disease perceive its impact on their lives differently.

In yesterday's blog post, I responded to Mr. Reed's article with some thoughts of my own addressing the question of whether Parkinson's should be viewed as a disease or chronic condition and whether the semantics matters.

Today, I would like to comment on Mr. Reed's statement"

“therapy needs to be delivered in a totally different way, and the programs should not be in a hospital, because we believe people with Parkinson’s are not sick.”

I must confess, I am totally on board with this recommendation, and in fact when setting up my own private practice, it was very important to me that I create a space that did not look like a hospital setting, for the very reason Mr. Reed states. Intensive speech and physical therapy programs of limited duration need to be followed and supported by community-based programs if we hope to provide participants with the best chance of long-term success.

Encouraging people with Parkinson’s to live a full and active life.

Mr. Reed stated: “Parkinson’s is not a terminal condition, and after diagnosis you can live a high quality of life.”

Quality of life, of course is in the eye of the beholder (i.e. the person living the life). I have had some Parkinson’s patients whose struggle with the non-motor symptoms of anxiety and depression have been far more disabling than tremor or other motor symptom of the disease. So, while Parkinson's is classified as a movement disorder,it is clear to anyone working with individuals with PD, that treatments offered must encompass more than just the body and include mind and spirit. I would tend to concur with Mr. Reed, that with or without a disease diagnosis, most of us make decisions about how we deal with the challenges and opportunities in our lives.

Speech-language therapy, whether provided individually or in a group, can contribute to improved quality of life by helping to reduce the isolation a person with Parkinson's may feel when communication has become difficult.

Structuring therapy from a “strengths perspective,” is a concept that is gaining traction. From early intervention through adult care, strengths-based providers use language that identifies strengths and positive attributes, promotes involvement from all team members, and focuses on goals and solutions. To be successful, this approach requires an honest self-appraisal on the part of the person with PD to acknowledge what they are able and willing to do, and the community resources to meet those needs.

Read Alexander's article in Parkinson Life here: http://parkinsonslife.eu/alexander-reed-people-with-parkinsons-are-not-sick/

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Voice Aerobics is a speech-language pathology private practice located in SW Florida, offering individual and group treatment for persons with Parkinson's disease. Visit our website to learn more about programs and products designed to support voice use.

http://www.voiceaerobicsdvd.com/

Are People With Parkinson's Sick? Some lessons from diabetes.

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 24 Jan 2018 14:12:00 +0000

I posed the question to members of a weekly speech class I host, and their responses were similarly varied. In the next few blog posts, I am going to share some of my own thoughts on the topic, and I welcome your comments.

Disease or Condition?

A few readers were apparently bothered by the notion of calling Parkinson’s a “condition” v/s a “disease.” The terms: chronic condition and disease are often used interchangeably in reference to other chronic diseases, such as diabetes, and in these instances, the semantic choice doesn’t really change the nature of the problem, but framing a disease as a chronic condition may change the way care is delivered, and this may have been one of the points of Mr. Reed’s article.

For example, diabetes is a chronic disease (aka condition) that has been discussed rather extensively in the medical literature, and several models of care have been developed that may apply to other chronic diseases, including Parkinson’s.

In evaluating medical care for persons with diabetes it has been noted that compared with acute illness visits, patient visits for diabetes were longer and involved more diet advice, negotiation, and assessment of compliance; exercise advice; preventive services; and health promotion; and less time was spent on procedures.[i] The foundations of diabetes care are all based on self-management activities that require significant patient input, effort, and lifestyle adjustment, such as diet, exercise, and medication. I think readers would agree that a similar foundation applies to Parkinson’s management. It has also been noted that feedback and education are often the cornerstones for behavior change and collaborative care, and this has certainly been recognized in management of Parkinson’s with many community-based programs stepping in to augment the role of physicians by providing disease and lifestyle education, care advising, and support.

Finally, in using diabetes care as a model there has been a growing focus on exercise, in light of reports showing that physical activity is the only self-management behavior associated with increased quality of life among patients with diabetes. Similarly, it seems you cannot read a piece of literature about Parkinson’s disease that does not emphasize the role of exercise, neuroprotection and quality of life, the remedies for “control” over PD that Mr. Reed is promoting.

In my next post, I will respond more directly to the question: Are people with Parkinson's sick?

Read Alexander's article in Parkinson Life here: http://parkinsonslife.eu/alexander-reed-people-with-parkinsons-are-not-sick/

[i] Is Diabetes Treated as an Acute or Chronic Illness in Community Family Practice? Diabetes Care 2001 Aug; 24(8): 1390-1396. https://doi.org/10.2337/diacare.24.8.1390

[i]Stanford University ‘Chronic Disease Self-Management Program’, Chronic Disease Self-Management Program. [accessed July, 2012]. http://patienteducation.stanford.edu/programs/cdsmp.html .

The Dow is Up and Research Down. Are Americans Complacent About a Government Shutdown?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 21 Jan 2018 15:13:00 +0000

Because of a lapse in government funding, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries until appropriations are enacted.
The NIH Clinical Center (the research hospital of NIH) is open. For more details about its operating status, please visit cc.nih.gov.
Updates regarding government operating status and resumption of normal operations can be found at USA.gov.

While searching for a research article this morning, the notice above appeared. During the 2013 shutdown, 73 percent of NIH staff couldn’t go to work. That means research projects were put on hold at the Bethesda facility, and new grants couldn’t go out to outside scientists awaiting funding. The NIH kept on essential staff to ensure the safety of critical cell lines, and to keep research animals (mice and primates) alive. But, some research can’t survive a pause. Some research which has been going on for years can't tolerate a stop.

According to the Michael J. Fox Foundation website regarding the current government shutdown:

Parkinson's researchers receiving grants from the National Institutes of Health will be able to continue their studies for as long as their current money allows them to. However, many grants are awarded in multiple installments and no additional payments on existing grants will be made until the shutdown is over. NIH staff will not review grant applications or make any new funding awards during the shutdown.

The NIH Clinical Center, a hospital and research institute, will continue caring for current patients but will not admit new ones unless it's deemed medically necessary.

If the shutdown is prolonged, eventually Medicare payments to hospitals, physicians, and healthcare providers like myself with small private practices, may be affected by disruptions and delays in payments.

Sad to say, many Americans can be somewhat self-centered and not care too much about what is happening with the government until it affects them directly, and in particular when it affects their pocket book. I guarantee you that if social security checks were not processed during this government shutdown there would be a lot more outrage from ALL Americans, regardless of political affiliations or preferences. Outrage and a demand that the president and men and women working as legislators in our government, ignore their own party politics, and work collaboratively to arrive at a solution for government funding that is respectful to all Americans, including veterans, immigrants, the poor, elderly, and sick, most, I imagine, who are not benefiting from the rise in the Dow Jones average.

Perception of Speech by Parkinson's Patients and Their Significant Other. Whose problem is it?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 07 Jan 2018 15:34:00 +0000

Most speech-language pathologist who work with patients with a diagnosis of Parkinson’s disease (PD), have heard the typical comment from soft speaking patients (hypophonia) in defense of their speech saying: “my spouse can’t hear.” Although couples will often laugh when this disparity of speech perception is discussed, the reality points to a sensory-perceptual disconnect for the person with Parkinson’s causing them to misjudge their actual speech volume. The mismatch between how a patient sounds and how they think they sound has been investigated by several researchers and attributed to such things as an impaired ability to judge self-effort in relation to motor tasks, while others attribute it to an auditory perceptual deficit. The insidious nature of Parkinson’s disease may also contribute to a patient’s faulty perception of their own speech and voice volume and clarity and it has been suggested by some that changes to the motor speech mechanism are actually a prodromal symptom that precedes the manifestation of gross and fine motor symptoms such as tremor and bradykinesia.

When seeing patients for an initial speech and voice evaluation, I typically administer the Voice Handicap Index (VHI-10), a 10 statement screening tool, which helps obtain an idea of a patient’s own perception of their voice problem. Recently, I have begun asking the patient’s spouse or significant other to also compete the VHI-10 without conferring with their partner, and the similarity of responses has been an interesting finding.

Recently, for example, a couple married for 62 years came together for the patient’s initial evaluation. Both completed the VHI-10 separately, but when their scores were reviewed, they were exactly the same; not only their total score but they also scored individual items the same. (Items are scored from 0-4 with 4 being the highest agreement with the statement).

The following is an example:

Item 3: People have difficulty understanding me in a noisy room. 0 1 2 3 4.

The patient and his spouse both gave it a score of 3. But when we discussed their responses afterward, the patient indicated that his score represented the effort it took him to speak in a noisy room, such as a restaurant, while his spouse reported that her score reflected the amount of difficulty she had communicating with the patient in a noisy environment.

What these observations suggest is that speech therapy for individuals with Parkinson’s disease needs to also incorporate the patient’s spouse or significant other. While we may be able to obtain acoustic measures that document an increase in vocal intensity in response to therapy tasks, we need to know if the patient’s primary communication partner also perceives an improvement in speech production across a range of settings.

Just as speech therapy for persons with Parkinson’s disease should not be a one size fits all, closer consideration of the communication partner/s may also dictate the best method for any individual patient, which might include behavioral treatment such as LSVT® LOUD or SPEAK OUT! ®, a speech device intervention such as the Speech Vive, amplification, or some combination of approaches.

Kelly and Pete Gaylord openly share about their challenges and successes of living with PD. They began a local support group in Punta Gorda, Florida and inspire members of the Parkinson's community with commitment to their relationship, exercise, and helping others living with PD.

Listen to my 2015 recorded interview with Kelly and Pete.

http://www.blogtalkradio.com/voice-aerobics/2015/04/17/starting-a-parkinsons-support-group

A Pureed Diet: From Slop to Sublime

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Tue, 26 Dec 2017 22:34:00 +0000

Shortly before my father's death in 2001, he was hospitalized following bowel surgery. Prior to his hospitalization, he had already physically declined from Parkinsonism, and also had some signs and symptoms of dysphagia ( a swallowing disorder). As a speech-language pathologist, I recognized my father's dysphagia symptoms of: drooling, occasional "wet voice," when speaking or eating, and occasional "coughing" when eating , but he was free of any upper respiratory infections and none of his symptoms were significant enough to recommend a change to his diet consistency. That is, until his hospitalization, when he was placed on a pureed diet. Since I was living out of state from my parents, I received information from my mother who reported that my father was refusing to eat. In a phone conversation with him, the very last, I might add, in the midst of my lecturing him about eating, he proclaimed: "it's slop!"

I couldn't disagree with him. Having worked in hospitals at that point for over 20 years, I knew that the pureed meal that arrived at the patient's bedside was often an unpleasant palate of bland colors slowly moving towards one another on a plate, and even the CNA's would curl up their noses as they lie the meal before a patient.

So, needless to say, many patients refuse to accept a puree diet recommendation. And, many carepartners express overwhelm as to what to cook and how to serve pureed food that is palatable and pleasant to look at.

For these reasons, anyone with dysphagia, who must eat a pureed diet, owes it to themselves to visit the website of local puree culinary expert, Diane Wolff. The impetus for Diane's fore into puree was when her own mother needed a pureed diet. Overwhelmed initially like most people, Diane soon learned that patients with dysphagia:

Often lose interest in eating when there’s no flavor or visual appeal to the food they are served.
May be at higher risk for weight loss and the ability to fight off infections, such as aspiration pneumonia.
May lose the ability to swallow or get inadequate nutrition from an oral diet alone, and eventually require a feeding tube.
May refuse to eat or drink an adequate amount, and lacking proper nutrition, in time, lose vitality and strength.

Determined not to let this happen to her mother, Diane set off on a journey of discovery and experimenting that would eventually manifest into a cookbook, Essential Puree. Basically, Diane has become the Betty Crocker of pureed cooking.

The Essential Puree is available as a paperback or e-reader, and on her blog, Diane even brings puree to the Holiday party, even including information on how to re-configure holiday cocktails.

Visit Diane's website for ordering information or for some of her free holiday meal suggestions. Bon Appetite! https://essentialpuree.com/

What about beer? A patient with dysphagia asked me recently.

You Don't Look Like You Have Parkinson's...and other stupid things people say

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 02 Dec 2017 15:37:00 +0000

I've had some interesting conversations with patients this week, and I wanted to share a couple with readers.

A patient told me that while out to dinner with some friends, a man at the table, who she barely knew, said to her: "you don't look like you have Parkinson's." The patient, an attractive woman in her 60's, was taken aback, and didn't know how to respond. We concluded that there may have been several reasons for the comment:

His idea of someone with Parkinson's was an old, in-firmed person, hunched over a cane like the famous Dr. Parkinson's images we often see at a conference.

The tremor in her left hand, the outward motor symptom of the disease is sometimes apparent, and at other times minimal. We wondered, should she have set the tremor into motion knocking utensils off the table in order to make her case that indeed she did have Parkinson's?

Was the person making the statement, concerned that he too might have Parkinson's, and probing for reasons to confirm?

Of course, a final option was to conclude that the person was just making a stupid comment.

During my weekly LOUD Crowd speech class this week, a newcomer asked another participant, Mike: "why are you here, your speech sounds fine?" At first, also taken a little bit by surprise, Mike hesitated, but then went on to say with a robust voice, "I have Parkinson's, and I'm doing everything I can to minimize the effect on my body and voice."

Mike, has been a faithful participant of our weekly class since completing speech therapy last year, and I thought the question was a great opportunity for him to be a walking testimonial to the fact that you can have some influence over what Parkinson's looks and sounds like.

Anyone with a diagnosis of Parkinson's disease (PD) who may be reading this post, should already know that no two people with PD are alike, and how people look and sound, and act with PD will be as unique as the individuals. and can be influenced by the actions you are taking to minimize the motor and speech symptoms.

My mother, has always been lucky to look much younger than her chronological years, and for much of her life, resented someone asking her age. We always laughed and thought it a bit of vanity, but, in reality, my mom didn't want to be characterized in some way by the number. Now, at 95 years old, she is still getting compliments and being told all the time "you don't look your age," but it is her age, and she now responds with pride that her healthy habits and active lifestyle choices have contributed to her good looks.

So what SHOULD Parkinson's look like?

If you have a diagnosis of Parkinson's, do you feel you have some control over how Parkinson's will look on you? How you will sound to others? I'd be interested in hearing your perspective.

Why Some Parkinson's Patients Have Difficulty Generalizing Speech Changes Outside of Therapy

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Fri, 24 Nov 2017 14:19:00 +0000

Most behavioral speech and voice treatment approaches for patients with Parkinson’s disease (PD) depend on a conscious response from patients to self-monitor some aspect of speech production such as vocal intensity (loudness) or speech rate.

Research who have examined response to voice therapy in patients without a diagnosis of Parkinson’s, have revealed that for some, improvements attained in the therapy setting may fail to generalize outside of the therapy room to everyday conversation, leading researchers to point to associated problems of cognitive-perceptual deficits.

When discussing their speech problems, PD patients often say to me: “it’s not automatic,” and, in fact, they are exactly right. Loss of the automaticity of speech coupled with cognitive changes can result in patients who are “willing” but not being “able” to do all that is expected of them when communicating in the complexity and demand of everyday conversation.

A study by voice researchers of healthy subjects[i] found that when speech practice contained tasks viewed as having a “low level of cognitive load,” such as reciting days of the week or months, individuals were more easily able to devote some of their attention to self-analysis and self-monitoring aspects of voice and speech production. This type of attention and cognitive activation is thought to play a role in the inhibition of old habits and facilitation of new motor patterns.

In contrast, spontaneous speech, also called novel speech or voluntary speech, refers to newly created, extemporaneous utterances; similar to what is required for participation in conversation. Such speech is assumed to involve a larger amount of communicative effort and attention to content than rote speech and this type of effort can easily distract patients from maintaining dual focus of attention on both content and some aspect of their speech and voice behavior they are trying to modify. The study authors concluded that patients attending behavioral voice therapy may have a better chance of successfully adopting new behaviors in exercises with a low degree of distraction due to content.

Better understanding of the relationship between cognitive load and speech-language planning/production is an important consideration when developing a treatment plan for individuals with speech and voice impairment related to Parkinson’s disease. Patients who have already have been identified as having some memory or other cognitive problems may struggle with self-monitoring of speech as the cognitive demands increase, and alternatives to conventional speech therapy, such as a speech device intervention may be a more realistic and satisfying option.

Voice Aerobics® Tools for Home Practice

Hi-VOLT® 4 PD is a 27 minute audio recording of guided voice practice. It is designed to be used with the Hi-VOLT® voice-on-light a calibrated feedback tool, designed to help patients feel the effort required to maintain a loud enough voice for every day conversation.

Voice Aerobics® DVD, is a recorded version of a 57 minute voice and exercise program developed in 1999, for patients to use before, during, or after formal speech therapy. This whole body voice strengthening program is guided, and focuses on posture, breathing, and voice. It’s FUN, it’s EASY, and when surveyed, patients reported increased awareness about breathing and voice use.

The Hi-VOLT® voice-on-light is used during speech practice.

The calibrated voice activated light provides patients feedback helping patients perceive the effort required for adequate loudness.

Device Interventions

SpeechVive is a device intervention developed at Purdue University. The device is fitted to one ear, and delivers babble noise, which in turn elicits the Lombard effect, causing users to speak louder over the background noise. Some users experience an instantaneous effect in loudness and speech clarity. Recent research conducted by Dr. Jessica Huber reported that when using the SpeechVive, Parkinson’s patients used breathing patterns similar to the non Parkinson’s control group, suggesting that for many Parkinson’s patients the speech mechanism is still capable of being used normally, and speech problems may be more attributable to a cognitive-perceptual dis-connect. Device interventions are now another option for improving the motor speech symptoms associated with Parkinson's disease.

[i] Cognitive Load in Voice Therapy Carry-over Exercises. / Iwarsson, Jenny; Morris, David Jackson; Balling, Laura Winther. Journal of Speech, Language, and Hearing Research, Vol. 60, No. 1, 2017, p. 1-12.

Newly Diagnosed with Parkinson's: Are Famous People obligated to be Spokespersons?

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 18 Nov 2017 15:59:00 +0000

This week’s announcement that the Reverend Jesse Jackson was diagnosed with Parkinson’s disease (PD), will no doubt be a point of discussion at my weekly LOUD Crowd class.

For some members, the news will merely represent another person who has been diagnosed and further proof that PD is on the rise. (Approximately 1 million persons currently in the US have a Parkinson’s diagnosis, it is estimated that in 50 years approximately 3 million Americans will receive the diagnosis, with the annual healthcare cost estimated to be over 1 trillion dollars).*

Other class members may welcome the addition of a famous person to the PD fold, with hopes that Rev Jackson will expand his role from civil rights activist to PD advocate, and campaign for the needs of Americans living with chronic diseases and disability.

For my part, I wondered when I read the news of Reverend Jackson’s diagnosis, if his prominent role in politics would mandate that he also now be a spokesperson for the Parkinson’s community, and also, how the media outlets would characterize his diagnosis. Would he be described as a “victim” of Parkinson’s, a “sufferer,” of a neurodegenerative disease, or some other powerless role that uninformed observers often like to assign to persons in these situations?

According to news articles, Reverend Jackson acknowledged that: “Recognition of the effects of this disease on me has been painful, and I have been slow to grasp the gravity of it.” I am sure class members would all be in agreement with this statement, and even some members who have lived with Parkinson’s now for over 20 years, still talk about how they grapple with the day to day impact of living with a neurodegenerative disease.

Eventually, I hope that Reverend Jackson will bring his passion and voice to Washington, and educate legislators about the need for research funding, accessible healthcare for all Americans, and access to affordable medications, not only for persons with Parkinson’s disease, but all neurological and neurodegenerative diseases diagnosis.

For the moment, however, I hope that Reverend Jackson waits to make PD a cause, and that he continues to become educated about the disease, remain engaged in speech and physical therapy so that he can be a testimonial to their benefit, and be open to learning from the experiences of the many bloggers, authors, and advocates already living with Parkinson’s and inspiring others with their words and actions.

Share your thoughts.

*The next epidemic Gregory A Petsko Genome Biol. 2006; 7(5): 108. Published online 2006 May 31. doi: 10.1186/gb-2006-7-5108

Speech Therapy Approach for Parkinson's Patients No Longer One Size Fits All

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sun, 12 Nov 2017 15:51:00 +0000

Currently several options exist for treating speech and voice deficits (collectively referred to as hypokinetic dysarthria) in persons with Parkinson's disease (PD). These include:

Behavioral Interventions:

LSVT® LOUD and SPEAK OUT! ®

Speech Device Interventions:

SpeechVive and Speech Easy®

Amplification

LSVT® LOUD and SPEAK OUT! ® require attendance in therapy 4x’s/wk and 3x’s/wk respectively. Therapy is administered by a speech-language pathologist who has been trained in the approach, and both therapies require that patients practice daily at home even on days when attending therapy. Although the theoretical underpinnings of each of these approaches is different, both take advantage of the fact that most patients with PD respond to cueing, and so through practice, repetition and redundancy, the goal is that patients will be able to self-cue and maintain a more normal level of speech loudness and clarity outside of a therapy setting.

Factors which may negatively influence outcomes with either of these approaches include: mild-moderate cognitive impairments, including: a reduction in memory, attention, and focus. Depression and apathy, and a home environment lacking social supports. Patients who live in assisted living or with an elderly spouse may have limited opportunities outside of treatment to “practice” and maintain communication skills acquired during treatment.

Participation in after therapy group speech classes may help to mitigate some of these factors.

The LOUD Crowd participants warm-up their voice

Speech Device interventions have the advantage of capitalizing on most patients’ ability to benefit from auditory masking which can include: babble noise, delayed auditory feedback and frequency altered feedback. Speaking in noise elicits the Lombard effect, which causes the speaker to increase vocal intensity. Current research suggests that when speaking in noise patients may also demonstrate a normalization of rate and improvement in respiratory speech patterns. The instantaneous effect of loudness attained with a speech device may make it a desirable option for patients who have previously enrolled in behavioral speech therapy but have been unable to retain improvements following discharge; those with mild cognitive impairments; and those unable to attend lengthy treatment sessions.

Patient wearing SpeechVive

Factors which may influence speech device use include: cost. as devices are not currently re-imbursed by Medicare or other insurance, and access, as not all speech-language pathologist are familiar with device interventions as an option for their Parkinson’s patients.

Finally, amplification may be of benefit to some individuals with a weak voice due to Parkinson’s, including patients who are in more advanced stages of the disease, or who just want to reduce vocal fatigue in high demand speaking situations including social settings.

Factors influencing success with use of amplification include: cost, although many insurers and Medicare will provide some amount of re-imbursement for amplification devices. Amplification is most beneficial if volume is the only speech feature that is a problem. If a patient has only whispered voice, abnormal rate, or impaired articulation, amplification will not directly impact or improve those aspects of speech production.

Patient using portable speech amplifier

What Approach is Best for YOU?

As you can see, a diagnosis of Parkinson’s disease, is only one variable that determines the best speech therapy approach for any individual patient, and patients should be wary of therapists who profess that there is only one approach to treating motor speech symptoms associated with PD.

You, the individual, are the most important variable, and at the time of your initial assessment, honest and open discussion should occur about what you are willing and able to do. Including your primary communication partner/s in this discussion will also be of benefit.

Want to discuss this more? Feel free the visit my website and listen to one of two free webinars exploring this topic further. http://voiceaerobicsdvd.com/

Driving Ability of Parkinson's Patients Can Quickly Decline

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Mon, 30 Oct 2017 12:22:00 +0000

“Health care providers for patients with Parkinson’s disease should routinely inquire about driving status and make necessary referrals for evaluation of driving fitness as needed.”

This is the recommendation of authors of a recent study published in Clinical Neurology.

While some patients with Parkinson’s disease who took part in a test of driving skills on a standardized driving course performed significantly worse at a baseline assessment than did healthy control patients, the patients who performed at a similar level as the control group made a significantly higher number of driving mistakes 2 years later on a follow-up evaluation.

Visual acuity at baseline and visual processing speed as well as worsening of global cognition and executive function were among the measures viewed as risk factors.

Deciding not to drive can be difficult for individuals with Parkinson’s disease (PD) as well as others with age related decline in motor or cognitive skills. Therapists working with PD patients are often in a position to observe and treat motor and non-motor impairments in patients, and they may be able to help in counseling patients regarding driving safety.

Hopefully, future research will identify therapy techniques or programs which might directly improve or strengthen substrates to driving. If you would like to learn more about driving and Parkinson’s listen to my podcast interview To Drive or Not to Drive with neuropsychologist, Dr Howard Kalter.

http://www.blogtalkradio.com/voice-aerobics/2014/10/03/to-drive-or-not-to-drive-join-howard-kalter-phd-neuropsychologist-1

Also available on itunes

https://itunes.apple.com/us/podcast/voice-aerobics-talking-2-you/id693758708?mt=2

Ref: Longitudinal decline of driving safety in Parkinson diseaseErgun Y. Uc, MD, Matthew Rizzo, MD, Amy M.J. O'Shea, PhD, Steven W. Anderson, PhD and Jeffrey D. Dawson, ScD 2017 American Academy of Neurology

Parkinson's Veterans Offer Tips to Newly Diagnosed

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 23 Sep 2017 12:29:00 +0000

This week on Thursday, I had a fun and busy day. I taught a Voice Aerobics® class in the morning and in the afternoon, conducted the LOUD Crowd®, a weekly speech class for people with Parkinson's.

A gentleman attending the morning group was just diagnosed with Parkinson's disease (PD) one month ago. He looked a little nervous, and when I asked if he thought he had changes to his speech and voice, he said he "wasn't sure," going on to admit that he is "in denial." His wife, looking a little more enthusiastic and hopeful, sat behind him during class, watching and listening to other members. I hope that their participation in class helped them learn a little more about what is possible for improving speech and voice, and also helped to replace a few fears with optimism that Parkinson's diagnosis is not the end of the world, and that they do not have to confront his recent diagnosis alone.

In the afternoon LOUD Crowd class, after an hour of vocal function exercise and Speaking with Intent, I asked members to share one lesson they have learned in living with PD that they might tell a newly diagnosed person. We have some real veterans in the afternoon class, with a diagnosis of PD for 25 years, so they really walk the talk.

In no particular order, here are some of the things they said:

Share your diagnosis with friends and family. (Hiding your diagnosis takes a lot of effort)
Trust in God, or rely on whatever spiritual beliefs you have, that you will be guided down the right path
Take your medications and EXERCISE
Don't compare yourself to anyone else, everyone is different in how they respond to medications and symptoms
Join a class or support group

I added: Eliminate the Negative and Accentuate the Positive.

Therapists and doctors focus a lot on what's wrong, and that can leave you feeling like there is something wrong with you. There is NOTHING wrong with you. PD is just one piece of you. When we TALK and LIVE with Intent, we are focusing on the positive. Using that part of your brain that is working to improve what you can.

LOUD Crowd members warm-up with Voice Aerobics then Speak with Intent!

Do You Live In SW Florida? Do You Have Parkinson's?

Voice Aerobics is a Private Practice offering:

Speech, Voice, and Swallowing Evaluation and Treatment

SpeechVive a device that improves speech in Parkinson's

Voice Aerobics® class monthly in South Sarasota County
sponsored by Neurochallenge Foundation http://www.parkinsonsneurochallenge.org/

and

The Charlotte County LOUD Crowd® held weekly at Universal Fitness in Punta Gorda (Deep Creek), Forida

Please visit my website and go to my private practice page to learn more

http://www.voiceaerobicsdvd.com/

My Mission:

To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower.
Mary Spremulli, MA, CCC-SLP

Missed Medication Puts a Parkinson's Patient in the Eye of the Storm

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Sat, 16 Sep 2017 18:01:00 +0000

Regardless where you live in the United States, no doubt you are aware that the state of Florida experienced a powerful hurricane last weekend. Here in Punta Gorda, located in SW Florida, we were all preparing for the worst while hoping for the best. Hurricane Charley which devastated our community in 2004 left a powerful memory which stirred in all of us in the days and hours ahead of Irma.

Fortunately, most of the county was spared the worst of the storm, and for that, we are indeed grateful. But a few days before the hurricane was forecasted to affect our coast, evacuation orders came into play, and since so much of Punta Gorda is in a flood and evacuation zone, I knew it would involve many of my Parkinson's patients. So, a few days before the storm I contacted patients via phone or email to be sure that everyone had a plan, and that medications were up to date.

One of my current patients, who I will refer to as Jim, has lived at a local ALF since April. He has had a diagnosis of Parkinson's for nearly 25 years, has bilateral DBS, and primarily uses a motorized chair for getting around due to his frequent falls.During a recent hospitalization following a fall, he was treated for dysphagia (swallowing), and I am currently working with him to improve safety for swallowing and improve speech intelligibility.

When I went to see him this week on Wednesday, I was frightened by what I found. Jim was lying flat on his back in his bed, speech even more unintelligible that usual. My first thought was to wonder if he had had a stroke, but as I began to understand what he was saying, he told me that he, along with the other residents of the ALF, has been evacuated to another facility approximately 90 miles away. He was due for a dose of his Rytary prior to leaving the facility, but, was told by the staff that he would get his medication once situated in the shelter. Unfortunately, that did not happen. At the relocation facility, he was placed in a room with 6 other men and one shared bathroom, which eventually was unusable when power was lost. As the days went by, no Parkinson's medication was administered to Jim.

By Wednesday, the day I went to see him, he had been without his Parkinson's medication for 3 days. That morning, he fell out of bed, and was taken to a local emergency room to be evaluated. When I arrived he was lying flat on his back in bed, secretions gathered in his throat, increasing his aspiration risk, and the call light and his water were both out of reach.

Before leaving the facility that day, I contacted his neurologist, who I knew would get in touch with ALF administrator and make sure that Jim's medication regimen was re-established.

Yesterday, Friday, when I went back to see Jim, he was sitting up in a chair. He looked bright eyed. Speech clarity was back to baseline, and he preceded to tell me about the stressful evacuation. Most of all, however, he said he wished that he could have called the ALF administrator up to his room on the day he fell. He wished that the ALF administrator and staff could understand how critical it is for people with Parkinson's to maintain their medication schedule.

Parkinson's patients are vulnerable when admitted to the hospital or as residents of an ALF or nursing home. Many of them, who previously, managed their medications at home since their PD diagnosis, now are subject to the staffing patterns and schedules of the facilities where they reside.

A day or two without the necessary medication/s can quickly put them in the eye of a Parkinson's storm. A worsening of motor symptoms leading to increased fall risk, dysphagia and immobility leading to increased aspiration risk, and collectively, these often lead to a hospital admission, from which some individuals never return.

So, what to do?

Spouses or other responsible family members must be vigilant watch dogs regarding medication administration. Speech-language pathologists and other therapists who may be seeing these patients can also help to educate the ALF staff and monitor timeliness of medication administration.

Hopefully, Florida will not see another Hurricane this year, but, all of us who live in vulnerable climates must have a plan, and this may need to include a well thought out plan for more fragile family members including those with Parkinson's and other neurological diseases.

Research Suggests Speech Therapy Focus on Posture AND Voice May Yield a Synergistic Effect

noreply@blogger.com (Mary Spremulli, CCC-SLP) — Wed, 02 Aug 2017 22:12:00 +0000

A Whole Body Approach to Voice Strengthening

There is general agreement in the voice literature that good, functional posture is fundamental for quality of the human voice, and most people would probably acknowledge that a good voice requires good posture. In fact, when I ask a group of individuals with Parkinson’s what they need to do to project their voice, many will respond: “sit or stand up straight.” But, what is not as well understood is what effect voice disorders have on posture.

A group of Italian researchers[i] wanted to better understand the relationship between the larynx, voice disorders and posture, and so they conducted a study investigating the effect of postural alterations in subjects with dysfunctional voice (dysphonia) and analyzed the study participants before and after specific speech treatment.

A difference in their research, perhaps from other voice research on this subject, was that they they were mainly interested in investigating the reflex component that controls posture alignment, namely the spinal vestibular reflex, the body's automatic response to adjusting balance and maintaining equilibrium. (Central vestibular function may be a contributor to falls and postural instability in many persons with Parkinson’s disease).

All of the patients enrolled in the Italian study had been suffering from chronic dysphonia for at least six months, with variable periods of deterioration, and they all remarked that their voice disorder limited their social or working life.

Since speech production requires adequate coordination between respiratory and laryngeal activities, or what is referred to as pneumophonic coordination, pneumophonic function was evaluated and found to be uncoordinated in all of the study subjects. Additionally, the majority had various degrees of postural abnormalities, such as: intra-rotation of the shoulders, caved-in chest and hyperextension of the neck with the jaws slightly thrust forward.

Postural testing was carried out using a computerized platform, with the patients standing upright with eyes open and closed. Study subjects were than enrolled in a speech therapy program, which was provided five days a week for four weeks in 60 minute sessions. Therapy sessions focused on posture awareness/control and voice production. In particular, the aim of this therapy was to facilitate global postural alignment in association with proprioceptive vocal exercises aiming to restore tone to the diaphragm fascia, relax the shoulder girdle and facilitate projection of the voice.

Following the speech rehabilitation program, direct visualization of the larynx (voice box)

revealed an improvement in laryngeal function in all subjects, and the investigators suggested that the relationship between posture and voice appears to move in a two-way direction. That is, modification in posture can affect the voice, and alterations to the voice production mechanism can cause modifications in posture. They describe a chain reaction, in which better control over voice and breathing led to improvement in posture, and vice-versa, through a reciprocal activation-stimulation mechanism, concluding that rehabilitation should involve voice and postural performance.

Voice Aerobics® was created in 1999 as an after therapy program for individuals with Parkinson’s disease and related diagnosis. It is a whole body approach to voice practice. Throughout a 60 minute guided class, participants are coached to focus on Posture + Breathing + Voice. When participants of a weekly Voice Aerobics® class were surveyed, they reported: Improvements in voice loudness as well as non-voice improvements in flexibility, increased range of motion and breathing.

Why not try it now? Available on DVD or streaming video. Buy or rent.

http://www.voiceaerobicsdvd.com/voice-aerob-dvd.html

Mary Spremulli, MA, CCC-SLP, conducts Voice Aerobics® and LOUD Crowd® classes weekly in Punta Gorda, and North Port,Florida in conjunction with the Neurochallenge Foundation. There is no fee for participants.

Visit our website to learn more. Or contact us at: info@voiceaerobicsdvd.com

[i] ACTA otorhinolaryngologica ita lica 2012;32:115-121 Posturographic analysis in patients with dysfunctional dysphonia before and after speech therapy/rehabilitation treatment